I read this piece a few weeks after Eildh was diagnosed with SMA.
I'm not sure that I like the analogy but it's about how life changes when you are told that your child is disabled, it's about coming to terms with this different life, a life that you never once imagined for yourself.
The future I once imagined is no longer tangible - if it ever was - but we do still have a future which is the most important thing that I have come to realise.
This new future, the future still to be written, is still as beautiful and precious.
It is still full of hope...
At least I hope it is...
"I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared the unique experience to understand it, to imagine how it would feel. It's like this . . .
When you are going to have a baby, it's like planning a fabulous vacation trip to Italy. You get a bunch of guidebooks and make your wonderful plans - the Coliseum, Michaelangelo's David, the gondolas in Venice. It's all very exciting.
After months of eager anticipation, the day arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says,
"Welcome to Holland!""Holland?" you say. "What do you mean, Holland? I signed up for Italy. All my life I've dreamed of going to Italy.""But there's been a change in the flight plan. We've landed in Holland and there you must stay."
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilance and disease. It's just a different place.
So you must go out and buy new guidebooks, and you must learn a new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there a while and you catch your breath, you look around you and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.
But everyone you know is busy coming and going to Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."
The pain of that will never, ever go away, because the loss of that dream is a very significant loss. But if you spend the rest of your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland."
This was written in 1987 by Emily Perl Kingsley, a founder of the USA Downs Syndrome Association and a write for Sesame Street. Her son Jason was born with Down's Syndrome in 1974.